About Tourette Syndrome
While it was first recognised as a disorder by French neurologist Georges Gilles de la Tourette in 1886, very little is yet known about the cause of Tourette Syndrome. As such there is no cure for the syndrome.
It is estimated that six in a thousand people are born with Tourette Syndrome (TS) although only a small number of these people will ever be diagnosed; the majority will have tics that are so mild that they may not even be aware that they have the disorder.
Tourette Syndrome is a paediatric disorder and for a formal diagnosis to be given, both physical and vocal tics need to occur concurrently before the age of 18 – although diagnosis may not be made until adulthood.
How do I know if my child has Tourette Syndrome?
Below is a checklist of some of the common tics that are symptomatic of TS. Be aware that children can often have an independent tic without having TS. Tourette’s is a combination of both physical (motor) and vocal tics that are involuntary and repetitive. The tics have to have been present for at least a year before the age of 18 for a formal diagnosis to be made.
As you read through the list you will likely tick (sorry!) a number of the boxes. In that, you are not alone. Your child is completely normal – in the world of TS anyway.
TS is neither a progressive nor degenerative disorder; rather, the tics tend to be changeable and will wax and wane over an otherwise normal life span. Each person will display different tics with varying frequency and severity.
Motor and vocals tics are categorised into two types – simple and complex.
Simple motor tics are fast and meaningless while complex motor tics tend to be slower and may appear purposeful. Simple vocal tics tend to be noises that often appear as just ordinary sounds like sniffing or coughing.
Complex vocal tics meanwhile are more intrusive such as repeating certain words or phrases such as ‘oh boy’ or ‘all right’ or repeating a phrase until it sounds ‘just right’.
Simple motor tics
Eye blinking or rolling; facial grimacing; nose twitching; shoulder shrugging; arm jerking; head jerking; head nodding; finger movements; mouth opening; jaw snapping; rapid jerking of any part of body
Complex motor tics
Hopping; jumping; touching objects; twirling; gyrating; bending; head banging; kissing; licking; pinching; facial gestures; copropraxia; echopraxia.
Simple vocal tics
Throat clearing; coughing; spitting; sniffing; snorting; screeching; barking; grunting; clacking; whistling; sucking sounds.
Complex vocal tics
Repetition of phrases like ‘shut up’, ‘you know’ and ‘oh boy’; making animal noises; muttering under one’s breath; complex breathing patterns; stuttering; variations in speech like accents, loudness, rapidity, tones, rhythms; coprolalia; palilalia; echolalia.
Definitions:
copropraxia – repeating obscene gestures
echopraxia – imitating actions of others
coprolalia – saying inappropriate things at inappropriate times
palilalia – repeating their own words
echolalia – repeating sounds or words said by others
Material sourced from The National Organisation for Rare Disorders, USA.
RESOURCES
The number of boys reported to develop Tourette’s is three to four times higher than girls.
How to get a diagnosis
The most common first step to getting a diagnosis is a visit to your family GP. Often a referral will be made to the local child mental health service, even though Tourette Syndrome itself is NOT a mental health disorder.
The referral to the mental health service is often made to diagnose the comorbid disorders that may be occurring along with the tics – most often ADHD, OCD or anxiety.
In some cases a GP may refer you on to a paediatrician or a specialist paediatric neurologist.
When seeking a diagnosis it is useful to take a video of some of the motor and vocal tics that you/your child is displaying as well as a record of some of the tics that have come and gone over time.
A diagnosis will only be made if BOTH vocal and motor tics have been occurring together for more than a year.
If it is an option, seeking a diagnosis from a private neurologist or paediatric neurologist is a much faster process.
In New Zealand there is a private practitioner in Auckland and Christchurch respectively with knowledge of Tourette Syndrome.
Auckland
Dr Rakesh Patel
Auckland Medical Specialists and Paediatric Specialists
Tel: (09) 638-9945
Treatment
The exact cause of Tourette Syndrome is not yet known, subsequently, there is no known cure.
After a diagnosis, it is then the individuals choice to continue living with the tics as they are or to opt to try a pharmaceutical intervention. The effects of medication differ for each individual and it does not stop tics from occurring but helps to manage the frequency and severity of tics.
Some district health boards may offer cognitive behavioral intervention therapy (CBIT) however most often this therapy is only available through private practitioners. CBIT works by training the individual to recognise when a tic is about to occur and to override that need to tic with a competing action so that the tic does not get the satisfaction of the sensation it was seeking.
There is a private CBIT practitioner is both Auckland and Christchurch respectively.
CBIT Overview
Evidence shows that the best treatment for tics and Tourette’s is CBIT, or Comprehensive Behavioural Intervention for Tics. CBIT (pronounced see-bit) is based on three main elements: teaching the client to first be more aware of their tics, then to do a competing behaviour when they feel the urge to tic, and finally to identify what changes need to be made in their environments that can help reduce the urge to tic. People with tics can often temporarily suppress their tics, but this can be stressful and exhausting. Instead of suppressing, CBIT focuses on teaching skills to manage the urge to tic and develop a specific competing response for each tic.
CBIT is designed to be a structured therapy, with 8 sessions over 10 weeks. However, in reality this tends to be different depending on each person. Some people benefit from only a few sessions, and others need more long-term intervention. For others, weekly therapy is not a possibility and fortnightly sessions are preferred. Success is influenced by a number of factors, such as the number, severity or complexity of the tics, how long they have been around for, other co-existing conditions, and of course motivation to change. CBIT requires concentration and practice learning competing responses. For this reason, this therapy is most effective for children from age 9-10, however some younger kids have also benefitted from it.
It is possible to use teletherapy (such as via Zoom or Skype) to deliver CBIT, however the effectiveness of this also depends on the person, and it can sometimes take longer to see the same level of results as you would face-to-face.
FAQS
What is Tourette Syndrome?
Tourette Syndrome (TS) is characterised by vocal and motor tics that range from mild to extreme in severity. Individuals can have singular tics, however both vocal and motor tics have to have been present for at least a year for an individual to be diagnosed with TS.
Why is it called Tourette Syndrome?
The syndrome is named after Georges Gilles de la Tourette, a French physician and neurologist. He was credited with defining the syndrome in 1885 after spending many years studying why certain people displayed sudden twitches and vocalisations.
What causes TS?
Tourette Syndrome (TS) is a genetic, neurological disorder that occurs during childhood. Not all children that inherit the TS gene display the traits that are associated with the disorder. Boys more commonly inherit the gene associated with TS. The ratio of girls vs. boys being diagnosed with TS is 1:4.
Is there a cure for Tourette’s?
No. At the moment the exact gene and neurons that cause TS are not known so there is no cure. Medication can in some cases help with suppressing the tics associated with TS.
Do the tics go away?
Remission can occur in adulthood. Some literature reports that 1/3 of adults have no tics; 1/3 still occasionally have mild tics and 1/3 will continue to have the same level of tics.
How many children in New Zealand are diagnosed with Tourette Syndrome?
The New Zealand Organisation for Rare Disorders endorses the Australian Tourette Syndrome Association statistics of 1:1000 children having TS. Not all of those with TS will be diagnosed with TS due to the mild nature of their symptoms.
Is Tourette’s a mental health disorder?
No, TS is not categorised as a mental health disorder. However many of the disorders that co-exist with TS like ADHD, OCD or depression are recognised mental health disorders and the psychological impact or issues associated with TS are treatable by mental health practitioners.
Does everyone who has TS swear?
No. Only a small percentage of those diagnosed with TS have coprolalia – an extreme vocal tic that causes the person to repeat inappropriate words.
What does ‘comorbid’ mean?
This term is used when a disease or disorder occurs simultaneously with another disease or disorder.
Will having TS shorten my lifespan?
Those diagnosed with TS can expect to live to normal life expectancy.
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